My Challenge Called SMA2

The Painful News

My parents realized something was wrong and took me to several different doctors.

They then referred me to New Orleans Children's Hospital to see some specialist.

The specialist did some tests on me and even a minor surgery called a biopsy on my right thigh.

If I remember correctly I think it was a muscle biopsy.

When the results came back is revealed that I had Spinal Muscular Atrophy Type 1 Muscular Dystrophy.

I was eleven months old at this time.

The specialist then explained how babies that are diagnosed with SMA1 don't live past the age of one year, then continued to explain how they needed to spend as much time as they needed with me. (Now this was back in the 90s, now more and more SMA1 babies are living.)

Once I past my first birthday and I was still going strong as a happy baby, the specialist re-diagnosed me.

Everything came back saying I had SMA2.

The specialist explained to my parents pretty much the same thing the only difference is that this time the age was three, they also told my parents that if I was lucky I could make it to the age of ten.

The specialist even explained how the children that were lucky enough to reach the age of ten were pretty much brain dead by that age. (Again this was back in the 90s things are WAAAAY different now.)

My parents and family were very sadden by the painful news of my diagnoses.

However just to let you know now like I said in my little side notes this was back in 1990 and in Louisiana Muscular Dystrophy cases were rare at the time, now the little SMA booklets that the specialist give parents after diagnoses don't even have a "end date" if you know what I mean. We are now proving doctors wrong.